Slipped up again…bloods and assessment this morning, first T due on Wednesday and they called this afternoon to say my neutrophils were too low and the Onc said to delay a week! So fed up, I’m going to be overtaken by the January at this rate!
I hope everyone else is doing OK.
Amanda x
Thanks Gillian and Jo. It’s very frustrating but I guess it does show something is going on! Bloods again on Friday then if I ‘pass’ chemo on Tuesday.
Yes Claire, I’ll definitely try to use the extra time well…on the plus side, it’s my youngest daughters 21st birthday on Thursday and family are coming round on Saturday, so at least I shouldn’t be feeling awful…hopefully!
Glad you’re done with the chemo TVGirl, I hope the physical part of your ‘battering by chemo’ will melt into the past soon. The psychological side is a different matter, I think we must all end up marked in some way by all this, stronger in many ways but vulnerable in others.
Amanda x
Oh Amanda I feel for you hun. Just hoping I don’t get put back anywhere along the line too.
Went back to work today to be told there is a sick bug going around the school. Wish someone had warned me before I went back!
Feeling very tired and have a headache now. It’s certainly taken it out of me. Oh well at least I should sleep better tonight.
On a different note we provisionally booked our wedding venue today. So Happy! Can’t wait for his all to be over to plan the rest of the wedding and forget about it all as much as I can. Like you say Amanda this does emotionally scar us. My second time of a breast cancer scar, once loosing my mum and now me. Hoping the physical scars will be hidden well by a wedding dress under my arm and that my hair thickens back up before then.
Hugs and love xxxx
Forget the provisional booking of the wedding. Not sure Leo will be able to save his half by then. ?
Got all excited too thinking we could.
Oh dear Vicky, hope you can sort it out, weddings can be pretty expensive! I guess some sort of adjustment will have to be made, wait longer, cheaper venue or cutting back on people you invite… none of things you probably want to do though ?
FredFlowerPot, you are having a tough time of it! Could they lower your dose a bit? I’m sure I read somewhere that they give you the maximum but that allows them to reduce it if you are struggling. If you tell them you sure thinking about giving up, I’m sure they will do something to try and help you. It must be so difficult for you to have to deal with this alone, they might be some support groups in your area you could go to when you feel well enough. Hang in there, only two more to go!
Amanda x
I know it is so hard Fred but you can do it! I know you can hun. You are a strong lady.
Nadz it would seem my panic was over nothing. I was just having a worrying moment. Leo sat down and worked his finances out and we can afford to do it for next April. Previous relationship problems haunted me a bit I think abd thought it would never happen. This treatment lark has my emotions and brain all over the place. Worrying about things I wouldn’t usually.
On a different note found out today after going back to work Wednesday that there is chicken pox going around the school in the other two classes in my year group. Called MDCU from work and said is it ok. They told me no go home. So looks like now I need to be signed off until after the easter holidays at least. Kinda sucks but I suppose it gives me a chance to do all those niggly jobs around the house that I haven’t been able to do since we moved in.
Hope everyone else is doing ok. Big hugs xxx
Hi all!
Fred I hope you are ok? Speak with your nurse, let them know how you are feeling. They had to reduce my cycle 3dose because of how bad I was doing with SE’S. And they do have a margin for adjustment that won’t affect the outcome.
Glad to hear that you are taking time off Vicky! I know you prefer to work but as you say, you can get lots of little things done that have been mounting up…Maybe even more wedding plans! As Amanda said, don’t worry if some things don’t work out, there can always be tiny amendments that can be made!
Amanda, how’s it going with you? Have your team suggested a way to ensure that you won’t have to face another delay in treatment?
Tina! Great to hear that your treatment plan is going well despite the side effects. Have you enjoyed the time with your daughter? Has your Husband returned yet?
I’ve not been on for a while because this cycle of T has knocked me for 6. For some reason I was expecting it to be a little bit easier. It has been a different experience but wow it’s been a real battle. My Se’s haven’t started to improve yet, I definitely can’t leave the house, because once my stomach cramps it’s a rush job to the toilet.
I have a perfume like taste in my mouth most of the day, I’m brushing my teeth 3 times a day, mouthwash after each meal and chewing gum at other times only abates the taste for a few minutes.
My whole body hurts and I’ve been having pretty strong palpitations, ones that have been reducing me to my knees. Nearly fell down the stairs lastnight due to one. I’ve also been hitting the fever mark nearly every night.
Nausea is still here in the background, making me agitated, as in I can’t stop shaking my limbs in a way to help ease it.
My right nostril keeps bleeding, Im finding it even more difficult to look at small screens and I have no energy. I also keep crying.
So yes, I hate this cycle. But I do keep finding something good in each day to hold on to
Quick question. Does anyone know if it is possible to catch headlice while on chemo or if the little buggers hate the poison they pump in us so don’t stick around?
My eldest has headlice again! Someone in his class must have them constantly.
I have treated it with headrin once and tomorrow I am going to ask Leo’s dad to clipper it short. So short that the can’t lay their eggs at the distance they like. He likes it long but it’s him or me and at the moment his hair will grow back quicker than mine. So trying to be on the safe side. He has agreed to it in a bid to help me save mine. It definitely wouldn’t withstand the chemicals and combing with the nit comb on top of the chemo. It would kill it off.
Luckily seem clear at the moment but as he won’t stop hugging the girls it’s bye bye to his long hair. I don’t want to risk catching it as I have done so well so far.
Xx
How’s your boy’s new haircut doing?
Only a number 8 but looks so drastic. I really hate it. Don’t think it suits him and his personality. He has decided he really likes it and wants to keep it like it. Oh well.
Yes Tina it has gone incredibly quiet. Not sure. Maybe they are all using the Facebook page. Personally I can’t find it and as the majority of people I know don’t know what is going on I don’t want to use it as they will all end up knowing on Facebook.
My onc finally called back today. In light of the side effects he is going to slightly lower the dose for friday in the hope they are more manageable.
How are you both doing Tina and Nadz?
Where is everyone else? How is everyone?
Xxx
Well I guess as long as he likes his new hair,all is good. Theres a Facebook page? I’d rather not with Facebook, I did recently tell everyone on world cancer day, but I tend not to share, haven’t even mentioned the loss of my Dad.
I’m not doing great, throat infection has turned into chest infection. I’m dreading next week. Really can’t get a handle on T. I’m still dealing with SE’S and it’s day 11 so far.
Also my oh is being posted away for most of the time with my last 2 and I’m dreading it. We both are, my temp has spiked rather dramatically a few times during the night but I’ve always had company to help.
Anyway, need to get my hair cut, it’s looking like someone took a hacksaw to it
Hi All, I’m still around! Weekend was a bit bit bust, with people around this weekend.
Had bloods again on Friday and they were ok so my first T is tomorrow, as long as nothing else comes along and buggers me up again!
I’m not cold capping but didn’t shave, I had a haircut to about 3 inches once it started coming out in handfuls, so now I look like a nearly hairless mad professor!
You might want to watch this, over 14 minutes but shows how much hair she kept towards the end (10.50 mins, if you just want to see her hair) the cold cap seems to have worked really well for her. bbc.co.uk/programmes/p03lrq13
Not looking forward to T, but desperate to get it done, only three more but only half way, too! ?
Love and hugs to everyone,
Amanda x
I was cold capping amanda but I stopped at last cycle,I was retching that much that morning that I couldn’t deal with the cap as well. I’m losing about the same I had with Cold cap. Prior to all this I had my shoulder length curls cut to short on one side to near shaved, with about 3inches on the other. The long hair side is now all choppy due to the hair loss, so need to tidy it up!
Good luck with T Amanda, would definitely recommend a hot water bottle for day 3 time.
Tina, he’s in Cyprus this weekend for 4 days, then he’s off to Oman for just over a week, then he will be away to the Falklands for 3 weeks. Inbetween all that he is away on courses or has to be on call on Base for 48hours at a time.
Hope all the mums had a lovely day yesterday xx
He’s at Brize Norton but we live an hour from Base, since we aren’t married we bought a house together over here, as we are both originally from Northern Ireland. How about you Tina?
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Thanks ladies, T successfully delivered yesterday. I’m quite tired but I think that is due to steroids messing up my sleep! My face, neck, and strangely the back of my upper arms just above my elbows are a bit hot and flushed!
I’m ready for the pain (well, as ready as you can be!); if things get loose down below, I’ll try co-codamol, otherwise I’ll use naproxen, if things are normal in the toilet department. My thinking is the dreaded diarrhea shows up, I’ll take co-codamol as that tends to constipate me, so may fix the diarrhea? The naproxen dosn’t usually affect my bowels, so that will be my choice otherwise!
I don’t know how you ladies cope with hubbies/partners getting posted, I really don’t. Yours is certainlt going to be clocking up some miles, Nadz!
I haven’t read all of this or watched it yet, but thought it could be interesting for anyone who had or will be having node clearnce. weizmann-usa.org/media/2015/06/24/kathy-bates-my-battle-with-lymphedema
Hope everyone is doing ok,
Amanda x
Hi all
Yes Tina I am still on Fridays with you xx
Lower dose this time to try and help combat side effects.
Amanda I was told by my nurses that with t it is usually the other direction bowel head, (mine didn’t though) so be prepared for constipation too!
I was so dreading the t but wanting to get it sorted so can totally sympathise there.
My hair is still hanging on. Loss was a little more again after the last cycle but with some fec still left in the system I am wondering if that was why. It has slowed down again now. Hoping it stays that way or gets less from now on. Could do with the weather warming up a bit and the sun coming out so I don’t look stupid in summery headscarves if the hair goes anymore. Found the wig too hot (due to hot flushes) and itchy most of the time so not really worn it. Just about managing to ‘comb over’ at the moment. Have to have a winter hat on outside though as it’s freeeezzzinng! ?
Also I have not been on the Facebook group so I have no idea of it is open or closed.
I feel for you ladies who have to go through this alone too. Any tips for me for getting through fridays chemo on my own. Leo has to work this Friday so can’t be with me. Last time I did last fec on my own (he had to sit in café with my poorly little one) I cried most of the way through. I can’t wear my glasses while cold capping so can’t see a lot or ear buds to listen to music. Don’t know how to get through on my own.
You must be so strong having to do it on your own ladies so much respect xxx
Amanda, I’ve just had a quick look at your link re lymphoedema. I’ve just got back from my first appointment with a lymphoedema therapist. I had just 9 nodes removed and noticed 2 weeks into chemo that my hand and wrist were a little swollen. I’m generally skinny so I only really notice when I compare both wrists - one is bony, the affected arm looks normal! Anyway I mentioned it to my BC nurse and surgeon and I was referred straight away.
So, I’m home with a compression sleeve, leaflets on exercise and been shown how to gently massage to arm to aid drainage. Plus a booklet and leaflets! I’m going back again after chemotherapy has finished (she’s going to measure my arm again) and before radiotherapy as she says it’s possible that will aggravate it further.
She said it was early stages and great that I was referred early because it’s easier to treat and contain then.
Hope this is helpful - the advise is, any concerns get in there early!
Kim (dropping in on you all from Jan starters!) xxx
Hi All
There isnt a facebook page as such but most months tend to set up a private group for their month and then everyone seems to migrate that way (hence me looking like im talking to myself on the Nov starters) we all chat daily on facebook but I post on there as some of the Sept/Oct ladies like to know how im doing
Its easy to set up a private group which no one knows you have joined and its a great way to share pictures or talk about daft none cancer related stuff (example yesterday I showed the Nov girls my new bikes)
Good luck with the T ladies x
Jen x
Thanks Kim and Jen.
Personally I prefer to chat on here.
Tina I know what you mean. I can’t close my eyes when capping and chemo either as the weight of the hat makes me feel like my head is going to topple one way or other and dizzy too.
I am seriously not looking forward to friday. Have started having bad dreams about it again and waking from that. Wish I wasn’t as know I won’t sleep anymore than 3/4 hours at a time soon due to the steroids.
On a positive note I booked up the registrar and put the deposit down on the venue today. Feeling very excited about that this morning but now just feeling sad because of Friday, and next week. My eldest has his bike ability next week. I can’t get his bike up and down each day with him. Its going to have to be kept at school. Really don’t want it kept outside in the elements as it’s a brand new bike, but don’t think they will keep it anywhere inside overnight. Wish I wasn’t on a bad week as could have walked it up and back with him.
Hate this chemo c***. Can’t wait for it to be over!
After Friday only one to go hey Tina xx